Monday, 26 January 2015

Survey results: why are MSers such risk takers?

I had no idea that MSers were such risk takers. #MSBlog #MSResearch

"Live and learn something everyday. I am bowled over by the preliminary results of haemopoietic stem cell transplant (HSCT) survey. I had no idea how willing MSers are to accept unlicensed treatments, with evidence that is essentially multiple case series, rather than the gold-standard randomised controlled clinical trials. Not to mention the risks they are prepared to take. We will need to follow this up with some high quality qualitative research in the UK; but if the message holds we will need to explore how we can start to offer this treatment in the context of a clinical trial. We will need to show that HSCT is effective and more importantly a cost-effective alternative to licensed treatments."


"If you want to contribute to the survey it is still open."



Some of the comments from the survey so far
  1. Anecdotal reports suggest HSCT can halt progression in PPMS and a trial would help discover the truth.
  2. There's a difference in having a life to being alive. For that reason, I'd take a 1-in-20 risk of dying at the outset of MS if that's a 19-in-20 chance at a normal life.
  3. I was dx'd at 30 years old. All my grandparents lived into their late 80s/90s. The prospect of 60 years of terminal decline, unemployment & financial destitution, relationship/family issues, chronic pain, progressive disability, dementia, and general despair is not for me.
  4. If there was a treatment with 50/50 chance of cure or death, i'd still take it over the propsect of 60 years of drawn out misery.
  5. Stop selling us such high risk, please.
  6. I think I would opt for meyoblative HSCT if I had highly active disease since there is enough data in my mind that it is the most effective therapy out there.
  7. Please enable self-funded international patients to be treated off-trial.
  8. I don't think you are too hung over on aggressive treatments or a laggard on HSCT. I think you are very sensible in your approach. My neurologist also thinks like you. He knows we will have little to no options once my disease becomes progressive and wants to stop it on it's track right NOW!
  9. Having a wife who "HAD" CIDP and saw the amazing results of HSCT for 80% + of people getting HSCT for all the autoimmune conditions treated by Dr Burt Chicago I as a patient would 100% want HSCT.
  10. I have PPMS and had HSCT with great results in Moscow with Dr Fedorenko. So pleased and grateful that this option was available to me.
  11. A bit academic for me as unfortunately I have SPMS. 
  12. I did HSCT with Dr. Richard Burt one year ago at Chicago Northwestern. HSCT stopped my MS after Tysabri had failed. 
  13. I fly in exactly 4 weeks to Moscow to be treated for SPMS with HSCT. I tried in this country with both Dr Silber at Kings and Prof Sharrack at Sheffield Hallamshire. I think we can safely say the UK Neurologists are too conservative! I did not want miracles; just to have the disease stopped in it's tracks. I have contributed 12% of my salary to the NHS for over 30 years and now I will be spending my life savings ($40,000) on being treated in Vladimir Putin's hospitals!
  14. If my MS progressed to be more of a burden on my life I would likely be prepared to take a higher risk of dying from a treatment.
  15. The level of risk (ie the risk of dying) acceptance is not constant: the older my children are growing, the higher the level of acceptance will be.
  16. As protocols evolve and increase the safety of the procedure HSCTs could provide a more cost effective treatment in the long term.
  17. The severity and progression of my MS would definitely dictate the risk I would be willing to take. Sometimes the risk of dying would be worth it if it meant that ridding this terrible disease and pain might end with treatment. Pain, whether physical or mental is tough to live with and I think patients should be given the choice. Its their body and their suffering they have to live with, not the doctors or lawmakers. 
  18. As protocols evolve and increase the safety of the procedure HSCTs could provide a more cost effective treatment in the long term.
  19. Well HSCT is a better option than euthanasia. 
  20. Why am I only now being made aware of Ocrelizumab ? My walking over the past month has deteriorated from 500 metres to 100 metres before needing a break.
  21. From the perspective of having grumbling but progressive MS rather than highly active MS i am not sure my opinion is valid. I find my slowly diminishing function frustrating and upsetting but I can adapt. If I had highly active MS I am sure I would want aggressive treatment, though 1:200 mortality risk seems quite a big risk still. 
  22. No chemo no cure?
  23. HSCT would be my treatment of choice and I will try to fund it myself should my MS start to kick off. Reason being I am young and have a life ahead of me. I want to live life as much as possible. Long term stats for MS are grim. HSCT is in my opinion the best change of curbing MS and all the destruction and lost dreams it brings. The low risk of death does not worry me but a prolonged period of severe and end stage MS does. 
  24. I am confused at how HSCT is safer (has less autoimmune problems) if it uses chemotherpay (such as alemtuzumab) to destroy bone marrow. 
  25. What about the genetic component of MS that was discussed at A/ECTRIMS in Boston? If a person's own stem cells are used aren't they at the same risk for MS before and after the therapy?
  26. The changes that happen otherwise healthy young adults who are diagnosed with MS is to me, worse than death- it is death by 1000 little 'losses' overtime that you 'get' to observe happen to your body without your input or consent. You know you will eventually loose most function and die an early unhealthy death to this disease- taking a chance on the front end to maintain your 'selfhood' seems a small risk compared to loosing everything slowly.
  27. I think the more options available to people, the better. I don't see HSCT as being different to any other type of treatment where the MSer and treating neurologist have to weigh up the risks and benefits. The trial results quoted on this blog do look very impressive. 
  28. The benefits far outweigh the risks! 
  29. MS is a terrible, debilitating, life-sentence of a disease. If HSCT slows it down or stops it, it should be offered. HSCT is a safe cancer treatment that has been around for many years.
  30. MS is known to be auto-immune. Therefore, HSCT, by ablating some or all of the immune system, will provide benefit for all types of MS. Even progressive.
  31. I think all effective therapies should be approved and allow doctors and patients to make the call on the risk-benefit trade-off. While HSCT appears to be pretty effective, I don't feel like I've seen good science on it, and so it seems more similar to CCSVI than the pharmaceuticals. However, I would be willing to take on fairly high risk to cure MS.
  32. What risk am I taking by not pursuing HSCT now that I am 54, healthy and don't have any current medical issues. What issues do I face by using Gilenya for 4+ years.
  33. In my opinion NIHR should fund a trial comparing HSCT to alemtuzumab, but not a randomized one. There are enough-patients who themselves would choose alemtuzumab because of the lower short term risk, and there certainly are many enough who wants HSCT. Therefore the trial hasn't at all have to be randomized (make a protocol with suitable inclusion and exclusion criteria). It is mandatory that besides using NEDA (number of relapses after treatment, EDSS after treatment and plaques and contrast enhancements on MRI) you also have to use quality of life (QoL) as an endpoint, for instance SF-36. For all ms-patients quality of life is greatly decreased and each day because of fatigue, pain, cog fog, bad sleep etc., and it is incredible that studied on DMDs - practiacally all of them - haven't applied QoL as an endpoint (but then, practically all the DMDs reduces QoL even more in addition). Therefore in a non-inferiority trial when you define a noninferiority margin and include a noninferiority hypothesis, you have to also include QoL as an endpoint!!!
  34. Besides, the NIHR should fund the same type of study for patients who have not had ms for a long time, and without highly-active ms (frequent relapses). The absolute majority of ms-patients are in this category, and their quality of life is low (it is mandatory for you to apply quality of life in all studies on DMDs and HSCT, and as Burt points out you haven't because DMDs don't improve QoL), and most of them have a dismal prognosis ending up out of work and in the long term with a high EDSS.
  35. I think HSCT is not only the best avalaible option to MSers with highly-active MS but also for
  36. PPMSers . You said that Ocrelizumab could be effective for PPMSers so I guess a more radical approach will be more effective.
  37. Anyway as today PPMSers have no a single one aproved DMT ,HSCT remain the best and only option.
  38. Have had non myelo in Russia Feb 14. EDSS of 4 now EDSS of 2.
  39. Alemtuzumab is not as effective as HSCT. I dont want to go through a procedure that does that comes with secondary concern for thyroid disease. I'd rather go through a process that halts the progression of MS and get on with the rest of my life. As the HSCT process is continued and refined. I believe the mortality rate will continue to decline.
  40. For those of us with RRMS that is transitioning and for those with PPMS or SPMS who are deteriorating noticeably HSCT is an excellent option as it arrests the disease progression in approx 80% (perhaps more now) of patients. It seems the protocol used in Russia is particularly effective on the more progressive types of MS. Cyclophosphamide with Rituximab,I am actively looking to get BMT..or HSCT presently, before my disability prevents me from being able to work, where the govt will have to support me entirely. HSCT has got to be a better option than this as it works out MUCH cheaper if it stops the disease and prevents further drugs and allows me to support myself!! A clinical study such as the one that is already in place in Sheffield would take too long to implement. Equally it is outdated since Russia has proven that HSCT works for progressive patients in stopping the progression of the disease! I think that peer published papers and practices such as what is in place in Canada and other parts of the world should be reviewed and adopted. No time for more trials!
  41. There is not really anything to comment! Anybody really knows that the only reason you are not offering this treatment is the market system...
  42. Same story as with vitamin-D, no difference!
  43. HSCT is worth it at every step - from Quality of Life Improvements to Financial Cost to the State to undergoing a Short Sharp Shock for a massive gain at the end of it.
  44. St Bart's should be performing HSCT!
  45. My son had highly aggressive ms had HSCT is a life saver. He is doing great no medication
  46. I am booked to have HSCT is Moscow in April 2015. It is ridiculous I have to fly half way round the world for treatment. HSCT HAS been done before in Glasgow,Scotland but it is not a routine treatment. It is also done in London and Sheffield UK buy with such narrow entrance criteria it is impossible for people to get on trial.
  47. Try living with MS? Then the medical profession would know about risk aversion for treatment compared to living with a degenerative condition. There is strong research and trial results supporting HSCT for MS. When will neurologists pay attention and look seriously at the evidence that is there? Oh, that's right. . .no ongoing revenue from people not taking drugs for the rest of their lives. Big pharma companies have way to much control of the medical profession. 
  48. I'd have this done asap if I could!! But I don't qualify for the trial & I don't want to leave the country!!! It's really very sad that this isn't available to everyone.
  49. I had HSCT for PPMS in June, 2014. My progression has stopped and I'm stronger, have better balance and I'm walking better then before the treatment. I have no regrets.
  50. I have been fighting for hsct for 2 yrs, I think a lot of the problem with approval is no nuro's will ok because it hasn't been okay ed by the FDA. It's been a treatment for 15 yrs in the United States and studied had by dr. Richard burt at northwestern university for autoimmune diseases and even longer over seas. And this same sort of procedure has been out for about 6 yrs in the US for cancer. Every body has there own way 2 heal and we finally found it! People who receive HSCT get there lives back and people with an autoimmune disease. Now have hope. But the chances for some people like myself of getting HSCT in time so it's more effective is so hard because you need to have your health insurance approve it. It's not like other trials where it free for patients to get the trial approved by the FDA. And a lot of us think it's because it's not a drug trial. Drug companies run the world it seems like. There is something out there that can really Help i have seen it first hand. why are we not even talking about this there are so many people I talk to at my MS infusions that have never heard of HSCT, but they have heard about all these new drugs that they will be taking for the rest of there lives. WHY IS THAT? HSCT is one treatment no more drugs. 
  51. HCST is the most current advanced procedure. The sheapest in long run and the safest in comparison to other treatments
  52. HCST is the most current advanced procedure. The sheapest in long run and the safest in comparison to other treatments
  53. Time is something few MSers who have had the illness for a long time can ill afford. HSCT is proven to work in sufficient numbers to war rent it being offered to those willing to take it.
  54. Am on waitlist for Russia- 2017-2018
  55. had hsct moscow 2013. 
  56. I received HSCT at Heildelber
  57. The 1-2% recent TRM is precisely what is seen in new HSCT protocols. I, for one, would advocate for the choice to treat very early on without the onerous requirements of DMD failures, none of which have shown any durability in preventing or halting progression. I had myeloablative HSCT just completed after 12 years of diagnosis and realize I still may never be able to walk right again. Not a single of my neurologists even mentioned HSCT. My quality of life is now destroyed as a result of having wasted many years on ineffective DMDs. Now I have to wait for the "hope" of remyelination, which we all know is an illusion as it will do nothing in progressive MS with axonal loss. 
  58. There are very few treatments that can help patients with PPMS like HSCT but unless their usage is put into normal practise and easily accessible people are dying while waiting.
  59. My daughter who had MS now for 16 yrs in that time she has been on numerous medicine that has not help at all she steady declining we have made up our minds to go to Russia next year but it be a lot easier for her and us if it was available in Australia and WITHOUT A REFERRAL from a neurologist 
  60. I think the more your quality of life decreases the more willing you are to take the risk.
  61. The chance for some years of a more normal life is worth it!
  62. I had HSCT in Moscow 2013. I was diagnosed PPMS. No enhancing lesions on all MRI tests. Progressing from running half marathons to needing a cane after walking a quarter mile. All within 2 years. Post HSCT I do not need a cane at all and can walk 3 miles with a rest in the middle for about 10 minutes.
  63. Should be offered to people with PPMS as well; there is currently no therapies that are offered for this type of ms. I believe HSCT would stop the progression of PPMS as it does with RRMS. I just wish someone would throw us a bone who are dealing with PPMS.
  64. I have PPMS and had HSCT in Moscow, Russia Aug/Sept 2013. It has stopped my progression and saved my life. You can see my story at www.kickinms.com. I stopped using my trekking pole after 6 months, and can now ride my bike 10 miles, and pushing for longer rides. My gait has improved, as well as toe drop. Before HSCT I could barely walk 1/4 mile, I can now walk 2 miles. So, my quality of life has greatly improved with HSCT. I think it should be an option for anyone with MS, including PPMS/SPMS. I knew the chances of stopping the progression were less for me, than someone with RRMS, but I took the chance. So glad I did!!!
  65. As noted, I'm the spouse, but my husband's neuro has been too conservative all along - "not approved!" "not enough data!" and now my husband is 41 with an EDSS of 7.5-8. Neuro's need to DO MORE and UNDERSTAND that there is a COST to not doing anything or being conservative. 
  66. I'm PPMS,with out hsct there is no other options. Regardless hsct is the only proven treatment to benefit any type of ms,and some forms have great odds. Either way I had no option prior. Now I have hope and a chance. 
  67. Coincidentally, I'm making the choice between HSCT and Lemtrada right now. The more I read about Lemtrada, the more concerned I get about safety and efficacy (particularly among patients who have been on Tysabri before and/or have been diagnosed for 6+ years).
  68. I have CIDP, not MS, but have become friends with many people with MS through various programs. I have seen so many of them deteriorate in the past 5 years. Like me, they started out with canes or walkers when we started the program together 5 years and now most of them are in powerchairs and some are housebound. If they had had a treatment that could stop MS progression they would have some quality of life. 
  69. No drug has yet proven to be as successful as hsct at stopping the progression of ms. I have rrms, i had hsct; the disease was stopped, i got my life back. No chemo = no cure. Hsct is not a new treatment; there is plenty of evidence pointing to its efficacy.
  70. I'm PPMS and have got my name down for Moscow in 2016.
  71. As far as I'm concerned it's a absolute no brainer.
  72. I'm already taking risks by taking Tysabri.
  73. The health departments all around the world should a public (only suffers of diseases that would benifit) referendum and THEN whatever is our wish respect it!!!! WE ARE SUFFERING NOT THEM! I need hsct and I can't afford it. I will be a guinea pig if needed. 
  74. I am RRMS since 4.5 years, 44 years old and mother of 3 girls 5, 9 and 12 years old. I hate taking DMD's because of side effects and hate the uncertainty of thr decease itself and are therefore going to have HSCT to stop this beast. My currently EDSS is 2 and I want to keep it that way or better.
  75. I have been treated 1 year ago I had Fulminant MS which does not respond to any 1st or 2nd line treatments. I did not have time to fail one so I went overseas to be treated. It has been a long road to recovery as I have had to learn to feed myself again, talk again (still a bit slurred) walk again etc etc. I was told I was going palliative weeks before I received treatment. I was having multi-system failure.
  76. No one has actually done a comparison (that I can find) between the deaths occurring for BMT for autoimmune only it seems to be all linked in with the cancer treatments. 
  77. For some reason the use of Tysabri and its links to some 560 deaths from December last year seem to be passed over as a slight inconvenience by most neurologists. 
  78. I met a person about 12 weeks ago that had been on Tysabri for 4 years and other than the initial tests for JCV for which he was positive no further titre level tests had been taken he has since demanded this and has been found to be at a very high level he now has no where to go. 
  79. I know that the trial arm for Dr Burts Satellite trials (Sheffield being one of them in the UK) have a trial arm of Tysabri it is my understanding that if you go JCV+ you are then treated with HSCT. There is no risk of GVHD with Autoglous SCT but a higher risk between myelo and non-myelo the risk is a no brainer when you have aggressive disease.
  80. We should have the evidence for HSCT before it gets offered as a standard of care treatment for MS. 
  81. I chose to have hsct 3 months after diagnosis
  82. I have had HSCT for SPMS & have seen many improvements. Now able to do things that I have not been able to do for many years. If I had done this treatment years ago things would be better, regardless I am glad I did this treatment in Moscow and would have no hesitation recommending this treatment. 
  83. If it can be done daily for other conditions I don't understand why it MS can't be included. Also, I don't unde why all focus is on RRMS & not other types. 
  84. I am not sure about HSCT. I want it to be approved in Australia before i do it.
  85. I'm a 38yr old single father of a 16 yr old daughter when I was first diagnosed I had rapidly progressive MS and I would love too slow some of the progression down or try reverse some of the progression. So I'm willing to try just about anything and I would love to try this not only for myself but my daughter and everybody else that has MS to see if it will help. I'm not sure if you actually reads what is commented on these things but I hope you do. I would love to get a response from you to know that you actually read this. My name is Alan Carpenter my email address is APC 2612 @ live.com. 
  86. I was one of the highly active ms'rs in Canada.. I had Malignant MS I was willing to take any risk as I was dying anyway. I am a true believer in HSCT I was a 9.0 at my worst. I now walk, talk, feed myself, type this to you with fingers that once didn't work.
  87. I am a 42 year old woman with SPMS and I had HSCT in Moscow in October 2014. I had no active lesions but was continually declining, I have already had improvement. I was on Tysabri for 2 years prior and declined whilst on the treatment.
  88. I was diagnosed in 1991 and had 19 years of remission. In 2010, I came out of remission, and M.S. Became progressive. Over the next four years I went from teaching couples dance classes with my husband to a cane and a rollator in March 2014. By that time I had learned of HSCT and been accepted by Dr. Fedorenko's in Russia. I was declined by the trials in Seattle and Chicago. I see some minor improvements since returning in August 2014 and am grateful to have been accepted and treated by Dr. F. Even if I don't experience further improvements, I still know I've taken the only treatment that might halt MS.
  89. HSCT beats Lemtrada hands down why not just push HSCT?
  90. Im not sold of the HSCT I am very interested in getting Lemtrada as it is available (almost). I do not want to travel to another country to have HSCT when I can easily get Lemtrada. I put my faith in the neuro to suggest my options, he believes the risks of Lemtrada outweigh the risks of HSCT.
  91. I am RR/SP MS, 2Neurologists are unsure as my relapses and progression are not typical, progression has been relatively fast since diagnosis in 2010. I am on my 3rd DMD and still declining. I want a chance to halt and if I am lucky improve some of my sympoms before I end up in a wheelchair, which I think is likely to happen in the very near future. 
  92. I had hsct and am 100% better than I was.
  93. HSCT should be available in UK, even if MSers have to pay for it. 
  94. 15 Years RRMS, 8 Years SPMS. I'm desperate just to stop the slide!
  95. Ms is a death sentence in itself.
  96. I would without a doubt choose hsct
  97. There are tx in other countries we should be able to evaluate and have access.
  98. It appears thet have success but then we have no real data.
  99. I have MS and if I'm willing to pay for HSCT. I can't understand why I cannot have it in my own country.
CoI: multiple

83 comments:

  1. I'm surprised that you're surprised. You post frequently on MS and depression: is it not completely understandable that we will do anything for a chance at improvement?

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    1. Could not have said it better myself. MS and desperation to get better go hand in hand, Trying something that might help is better then nothing at all.

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    2. I am surprised, because a large number of commentators keeping knocking-us for promoting higher-risk strategies early in MS.

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    3. Perhaps people who believe in HSCT hope it will be a cure - one procedure and no more MS so they are prepared to risk all.

      But how realistic are they? What is the prognosis of success for HSCT?

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    4. Have you read Thinking Fast and Slow by Daniel Kahneman /similar books on behavioural economics? Full of interesting insights into human decision making and risky behaviour!

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    5. And would those "large number of commentators" be drug companies? Or the MS Societies that are funded by drug companies? Or risk averse Neuro's who never listen to their patients; and are also blinded by the drug companies?

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    6. In fairness, most people don't say "it's one procedure and no more MS", but rather that it is the most effective treatment out there at present at inducind durable remission. Without doubt, some patients will need to be retreated. But if you believe in the concept of the disease being mediated (at least in the RRMS phase) by errant immune cells - as is the hypothesis behind all of the newly emerging "highly effective" treatments such as Alemtuzumab, Daclizumab, Ocrelizumab, Ofatumamab, etc. - what is beyond dispute is that HSCT ablates those lymphocytes more completely than any of those drugs in isolation, and has the potential benefit of being able to permeate the BBB to exert an effect on those cells in the CNS as well.

      I heard a good analogy for it ages ago. If you had a glass of orange squash, and imagine the water is the healthy immune system and the orange squash concentrate is the autoreactive immune cells.... The drug therapies are the equivalent of tipping out a bit of the squash, and topping it up with water (and repeat). The squash is more diluted, but you've still got orange squash at the end of the day. HSCT is like tipping out the whole cup and topping it up with water. You've not longer got orange squash - you've got a new cup of nice and healthy water! Unfortunately, even with HSCT, sometimes there are traces of squash left in it, so some need to be retreated.

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    7. Re: "Thinking Fast and Slow by Daniel Kahneman"

      I couldn't get past page 70 or so; too much repetition. I was aware of most the concepts from reading various articles in journals etc. Overall a very good book and describes how the brain processes information based on intuition.

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    8. Re: "...what is beyond dispute is that HSCT ablates those lymphocytes more completely than any of those drugs in isolation,"

      We don't know this; without comparator trials this is simply speculation. Alemtuzumab and anti-CD20 therapies may prove to be equivalent, or even better, than HSCT. Until we do the trials we won't know.

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    9. HSCT drops PB lymphocytes down to below detectable levels, and induces neutropenia (hence the 7-10 days in isolation). You don't see that with an Alemtuzumab infusion. Do you have that with the new anti-CD20s in trial? Depending on where you have it, non-myelo HSCT is chemotherapy plus a mab (Rituximab in Moscow, Alemtuzumab in Israel, etc.). The myelo-ablative protocols are even stronger. Surely you don't need a trial to tell you that a mab on it's own is not more lymphoablative than a mab and high dose lymphoablative chemo (or, in the case of myeloablative, BEAM + ATG). Speak to a haemotologist - the comparative strengths of all these drugs and protocols is well understood already.... Lemtrada (Campath), CD20+ and HSCT are all old news to them. They've been using them for years and years for haemo malignancies where they're seeking absolute lymphoablation.

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    10. Who says HSCT is working by depleting all lymphocytes subsets? May be all we need is to deplete the B cells? We still don't know if MS is autoimmune; the only common cell in relation to all the highly-active treatments is the B cell (daclizumab being the exception). I personally think using HSCT is like taking a sledgehammer to crack a nut, when all we need is a targeted therapy that will bring safety.

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    11. RCT’s are needed only when the outcome is not obvious. EBM is about using outcome data for making therapeutic decisions. That data can come from RCTs but also from observation. Oncologists have been using both Campath and HSCT for years and years.

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    12. But observation is still comparative. Until you run these treatments against each other you don't know which one will have the best risk:benefit ratio. I hypothesise that alemtuzumab will have a better risk:benefit profile than HSCT and we can give it now under the NHS. I also hypothesise that ocrelizumab will have a better risk:benefit profile than both HSCT and alemtuzumab. Please note I use the term hypothesise; what we now need to do is design an experiment to disprove the hypothesis. The latter is how EBM works. We don't simply adopt therapies because there are several open-labels observation studies published when there are licensed therapies available to treat MS.

      To take HSCT forward as a treatment it needs to run against alemtuzumab in a head-2-head study. If we don't do this it will remain a fringe therapy with very low adoption rates.

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    13. Would you please include something about HSCT in the forthcoming Research day, if you are not already? Thank you

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    15. "I personally think using HSCT is like taking a sledgehammer to crack a nut, when all we need is a targeted therapy that will bring safety"

      We don't have targeted therapy though do we! Until we have more tools in the box a sledgehammer it must be.

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    16. When all you have is a hammer, every problem looks like a nail.

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  2. Dear Professor,

    Thanks for that survey that clearly shows what we have known already.

    Life is a bitch at the end you die - MS is much more risky than HSCT, wouldn't you agree?

    Just for your information, the current patient is on his own to find the proper treatment, and frustrated to no end with the doctors that work as agents (either knowingly, or NOT knowingly) for the industry.

    The "gold standard" -For me that statement looks a bit like deception since only industry can do the assays you say are the only acceptable ones (Phase-III, randomized, controlled). This looks to me like medieval times when the church controlled people by their cleric monopole:
    "As soon as a coin in the coffer rings, a soul from purgatory springs". And then, this discussion becomes ridiculous if you think about how MS patients are being treatment with steroids and interferons for which there is no positive controlled data at all...


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    1. Re: "gold standard"

      The double-blind placebo-controlled trial was invented and perfected to get rid of bias. Almost every HSCT or BMT study published to date is riddled with potential biases. The problem with the gold standard is that they have become so big and complicated and expensive that it is very difficult to get funding for them.

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    2. Prof. G,
      You posted on this blog comparisons of oral DMTs which were not tested head-to-head against each other. Modern statistics allows for meaningful comparisons in this case. Perhaps a really close look at acceptable trial design is needed - with all "big data" algorithms, and potential availability of observational data from all over the world, one can re-think optimal approaches to assessing efficacy and safety of therapies and procedures.
      A grossly simplified example from physical sciences: some 20-30 years ago, any experiment to test a single-parameter correlation was first llinearized, and then linear regression gave the values of the model parameters (determined from the slope and intercept of the straight line), errors were also determined from the same linear regression. Today, nobody converts the data to a linear model, non-linear fitting is done instead. This is possible due to greatly improved computer power (and, to some extent,better fitting algorithms). The same developments should enable much less "linear" protocols for clinical trials, observational studies, multi-parameter data analysis, etc. Given your involvement with statisticians in studies of oral therapies, maybe you can talk to your statistician collaborators about modernizing trial protocols? Of course, the regulators are not going to change their policies overnight, but it is still worth looking at the "big picture".

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  3. I recently had lunch with a new friend with MS. We were comparing our diagnosis stories and I had to stop telling mine because it was too emotional. While I was trying to compose myself he said, "Me and my husband call those the dark days." That is when you experience the true and very real terror that is MS. I will take almost any risk to avoid experiencing that again. Unfortunately the risk is usually of something equally bad or worse happening but at least there's a chance that it won't. Every day I live where things are reasonably stable is a blessing. The day they announce Tysabri without the risk of PML will probably be the happiest day of my life.

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  4. Despite working with MS patients for decades, I'm surprised that you are surprised. At the end of the day you can close your lab door, go home, go for a run and forget about MS. We don't have that luxury. 24/7 and losses you can't start to calculate. Just stopping the disease in its tracks would be a blessing. I could live with that. I can't live in a life where you are moving slowly up the EDSS chart. Research has failed thousands of MSers, surely something big must be on the horizon. Before then, HSCT must be available to those who have assessed the risks.

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    1. Re: "At the end of the day you can close your lab door, go home, go for a run and forget about MS."

      It is not as simple as that; I spend far more time than 9-5 working and thinking about MS. But I suppose that is not the issue. As for running; I think my running days are over; hip injury will not go away.

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    2. Thinking about MS is different than living with MS. knowing that your running days are over because of the self limiting hip injury is one thing compared to slowly giving up activity after activity ad nauseam with no knowledge of what part of yourself you will loose and when and if the damage will end. It is the known unpredictability of this illness that makes it so tragic. It is made that much more ironic by the fact that any and all effective therapies (MABs and HSCT) are only really effective early in the disease when they truly seem like taking a shotgun to kill a mouse....

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    3. Thinking about MS is different than living with MS. knowing that your running days are over because of the self limiting hip injury is one thing compared to slowly giving up activity after activity ad nauseam with no knowledge of what part of yourself you will loose and when and if the damage will end. It is the known unpredictability of this illness that makes it so tragic. It is made that much more ironic by the fact that any and all effective therapies (MABs and HSCT) are only really effective early in the disease when they truly seem like taking a shotgun to kill a mouse....

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  5. What you are seeing is the relationship between desperation and risk taking. We don't have time. The blog started five ago, but has not reported any advances in treatments for progressive MS. We are told to watch this space etc. etc. We need more than this. Too many failed trials pushes us to grab at treatments such as HSCT. Stuff your gold standard MS trials. They serve academia only, not MSers. If you are serious about protecting the MS brain ditch the academic procedure that you slavishly follow. Time to take some risks to match the risk taking appetite of MSers.

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  6. Love the blog, but sometimes I think you guys really don't get it. You've got the whole "risk taker" thing completely backwards.

    If your house was on fire, the only thing you'd be interested in is putting out the fire. You wouldn't accept it if the fire brigade rocked up and suggested you pay them an annual subscription fee to come over every day to give it a quick blast with a fire extinguisher to make it burn down more slowly or reduce the speed the fire spreads between rooms (orals/injectables). You also wouldn't accept it if they offered to leave the fire burning, but put some fireproof seals in to stop it getting into any more rooms (Tysabri). And you'd tell them to p*ss off if they suggested they put the fire down to a simmer, and come back every year (for a fee) if it starts again (Lemtrada).

    You just want them to put out the fire! And that's what HSCT potentially offers.

    Neurologists are aiming too low. At least the haemo's, in HSCT, have come up with a treatment that aims to tackle the underlying cause (errant immune system) and correct the problem. Rather than using us as a giant herd of cash cows to milk for the rest of our lives for profit, as pharma have. Cos there's no money in a cure.

    The risks of having MS are outlined in the "MS is a serious disease" infographic pinned to every page on this blog, which refers to it as a fate worse than death with a future of chronic pain, dementia, disability, divorce, wheelchairs, palliative care, premature death, depression, suicide, and - if you manage to survive all that - a brain shrivelled up like a 200 year old prune.

    Why then would you be surprised that people are willing to risk a very low <0.5% chance of death, to avoid a 100% chance of a fate WORSE than death? What kind of crazy messed up world do we live in where wasting your time (and brain) on drugs - which by their own admission offer zero chance of a cure and don't stop end organ damage - is considered a sensible and sane "low risk" approach? Utter madness.

    Call the fire brigade!

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    1. Love your analogy! well thought out (and entertaining) response - apologies I know it isn't a laughing matter but if possible it is good ot retain a sense of humour. And yes I do have MS.

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    2. Good analogy......the problem is not every case of MS is a conflagration. Because patients present with symptoms on a wide neurologic spectrum the use of highly aggressive stem cell therapy should be reserved for non-responders. I agree that this procedure is under utilized probably due to not only conservatism but to possible legal ramifications if complications arise. I would like to see the results of intrathecal rituximab and other procedures where therapies are directed into the CNS.

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    3. Yes we get it, but if you don't have a fire brigade or they only have water pistols:-0

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    4. Ditch the academic procedure that you slavishly follow. Time to take some risks to match the risk taking appetite of MSers.

      "It is the regulator procedure, created for the sake of safety......you need to get the regulations changed to make it safe for the neuro too because if the treatment goes wrong and they have not followed the rules, this is where the problems occur.

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    5. How safe is EDSS 9 or 10?

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    7. No...because it is not licenced/approved and it costs an awful lot more than paintball,

      I asked what this actually costs within the NHS and did not get a straight answer but I suspect a lot.

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    8. The point I'm trying to make is that - even on a privately funded basis - this is not available in the UK even for those who want it, will pay for it, and accept the risks. HSCT is licensed for lymphoablation (cancer), as is Campath-1H (Lemtrada). The long term risks and benefits of both (in terms of lymphoablation) are well understood with over a decade of experience behind it. And the concept of lymphoablation as a treatment of MS is already established (or else why on earth are you treating people with Lemtrada in the first place?).

      There's already reams of data on the natural history of MS, and the efficacy of Lemtrada, to which HSCT can be compared.

      If the rest of the world operated on this kind of logic we'd still be in the dark ages.

      This whole discussion reminds me of that spoof in the BMJ, which quite rightly points out there's never been a randomised controllled trial of parachutes. By your logic, nobody should be allowed to use one until you've dropped a few thousand people at random with and without a parachute to prove their efficacy...

      For me, their conclusion summed it up perfectly: "We think that everyone might benefit if the most radical protagonists of evidence-based medicine organised and participated in a double-blind, randomised, placebo-controlled, crossover trial of the parachute." Any volunteers? :)

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  7. I think this might look differently if people fully understood the process of chemotherapy and complications post procedure.

    It's possible they are simply drawn to the high success rate of the procedure which is blinding them a bit.

    But without reasonable alternative, can you blame us? We just want to live good quality lives...

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  8. Risk Takers?!?! A lifetime of DMDs is riskier in my view than a one-off 1% mortality risk, which is becoming less and less the more doctors perfect their HSCT protocols. Anyone who thinks having HSCT is taking a risk either isn't suffering from MS or has their head completely buried in the sand. Years of FDA clinical trials and EBMT data ARE the randomised controlled clinical trial results you are after. Your bias is blatant.

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  9. Is this HSCT proven to be working in 10 years time after the first procedure or is this the same story as with CCSVI? Are there any follow-up studies?

    I am so astonished that people are so willing to undergo such a risky procedure in countries that are far away with no guarantee that it will work

    - have you tried all of their new aggressive treatments first?

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    1. Not everyone is eligible for aggressive treatments. A gradual shredding of brain reserve is quite OK apparently and doesn't require effective DMT's. Cant believe I'm saying this but I almost hope for a relapse. Without a new disabling attack an increase in lesions don't cut the mustard unfortunately. Crazy.

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  10. I think the frustration being vented is a breath of fresh air. For too long patients have been too deferential to doctors, consultants and academics. You have stuck your head above the parapet so are taking the flack for neurology and neurology research. At the end of the days MSers want to have hope for the future and get on with their lives without the inevitable decline which comes with this disease. Maybe, just maybe so good ness will come this year. One neuroprotective drug is all we are asking for. If a Phase II trial shows efficacy and safety it should be made available ASAP. We haven't got time for another 6 years of Phase III trials and licensing.

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  11. Some people are desperate Prof G,my wife is now 9 on the edss, very surprised at you being surprised. Given the length of time this has been around not sure why it's taken this long to be taken seriously in the UK. Any urgent action on HSCT will be welcomed.

    Regards as always.

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  12. In MS, each day quality of life is low because of fatigue, cog for, pain etc. You're no longer an insider, it's you with your chronic disease and dyfunctionalit which hinders you in participating in normal life with your loved ones and friends. To start a treatment with a DMD which aggravates your quality of life even more - and use this/these for 20 years - and with no sure assurances of achieving less disability in the long term (according to AHRQ), HSCT stands out as the clearly best option: because it also greatly improves the QoL!! For serious diseases, when phase 1-2 studies show that a new treatment is moderately to much better than the established one, it becomes unethical to continue with rancomized controlled trials comparing the new treatment with the old established treatment. Theoretically, randomized controlled trials rank on top, but in practice other less demanding and expensive trials suffice in such a setting. As healthy and as a medical professional, looked from a distance, a randomized controlled trial seems to be the very best. But if you become ill, and the time is running out, you won't be satisfied with waiting 10-20 years for the health authorities and the leading health professionals to reach an agreement about how to find a fitting solution.

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  13. Having had a wife who was CIDP(cousin to MS) and seen the amazing results of HSCT 2 years after the HSCT and following on a daily basis the results of Dr Burt in Chicago, USA is getting not to do HSCT is unwise. Seriously look at the latest results of the phase 2 JAMA published results. Better than 85% positive results. Uneducated neurologists and doctors in general who make statements of "how dangerous" HSCT is are looking way back to the earliest days of HSCT(where radiation) was part of the regime. Patients are being denied the life returning, scientifically proven procedure. Needless scare tactics by doctors especially in the USA were you can see the financial incentive to push DMDs is just simply wrong and akin to murder.

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  14. You've given us an outlet and we are grateful. Please forward these results to the body which regulates neurologists so they can email it to all your members. MS needs to be treated as a cancer as it's a death sentence. Ditch the first line injectibles - they are the equivalent of a peashooter trying to take down a battle tank. Only induction treatments can get this disease under control and give us hope. Time for neurology to join the 21st century. Neurologists might even enjoy giving patients treatments which improve their health and gives them hope for the future. Other medics save lives or extend lives - time for neuros to experience this feeling. The tools are here today - just need some cutting edge neuros to use them for the benefit of their patients and to stop hiding behind the barriers which they have created.

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  15. MSers are lemmings. Go from one fad to the other. All the while neurologist get more complacent. Suckers, the lot of you.

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    1. Totally inappropriate comment and I resent being called a lemming and a sucker as much as I resent the two neurologists monitoring my MS being labelled complacent

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    2. Anonymous at 1:21 pm should try walking a mile or two in our shoes, then they might show a little more insight and compassion. However, the attitude displayed is so clearly insensitive and ignorant that I suggest that instead of ordinary MSer shoes being provided Anonymous 1:21 be subjected to the ancient ritual of Chinese foot binding instead, as that's a "fad" that is entirely appropriate with the era in which their comment belongs.

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    3. And your suggestions are, anonymous 1.21? How do we become less 'lemming' -like? What amazing wisdom have you, that we obviously lack? Please do tell?

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  16. Team G (Prof G in particular)...

    Can I ask a slightly provocative question... Given all we now know about MS, and the mounting evidence that it is essentially a haemtologically-routed disease and that all of the best and upcoming treatments are essentially immuno-ablative, would MS not be better off in the hands of haemotologist/oncologists, rather than neurologists?

    I ask this because it seems that almost every so-called "highy effective" treatment we see coming to market are repurposed cancer drugs, that have been around (and approved) for years and years in the haemo/oncology world. Ocrelizumab, Ofatumamab, Daclizumab, Alemtuzumab, Mitoxantrone, Cyclophosphamide, etc. And they're being used for exactly the same purpose in MS as they are in cancer (i.e. to ablate lymphocytes). Do we really need to wait 10 years to repeat the same trials?

    Haemo's have decades of (well funded) experience in immunology and wiping out haemotologically-rooted disorders, including T & B cells, as per lymphoma.

    Most neurologists are not trained in haemotology and/or immunology. They are nerve specialists. As it's clear MS is a disease of the blood, and not the nerves, is it fair to say that one of the reasons treatment for MS is so off the pace versus cancer, and is not tackling the root-cause of the disease, is that the specialists who "own" it actually don't have any specialism whatsoever in the root cause?

    Clearly you and Team G, due to your research remit, are specialist MS-ologists and have a broad understanding. But I'm yet to meet a general neurologist who is up to that standard, and 99% of MS patients in the UK are under the care of these docs. My neuro, very nice guy as he was, was a stroke specialist, and his understanding of the underlying haemotologically-rooted mechanism was about as deep as your average carpark puddle.

    Should MS be reclassified as a haemotological condition, and treated as such - and would this accelerate access to more highly effective treatments?

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    1. Classifying MS as a haematological condition will do not favours to people with progressive MS, but if you treated as an acutely life-threatening condition then people would get more rapid access to un-proven treatments as the bar to access them is lower....Look at the ebola virus out brake. However this would be misleading.

      However, happy if you shake-up the neuros to have a think....maybe we can have some balance, if some one has not had a good experience with HSCT

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    2. Maybe the definition of a life threatening condition needs to be revisited given the strength of feeling shown throughout this post.
      Time is brain after all.

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  17. Can some of the docs answer if HSCT actually stops MS? Is it working in 10 years from now?

    Are people who underwent HSCT back to 'normal' - eg is their EDSS getting better?

    What is so positive about HSCT?

    Am still confused why so many want to jump on this HSCT train?

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    3. (a) Does HSCT stop MS...Definitely the answer here is no for every one treated, but it may do for some. The procedure is not 100% effective at least not yet (see below) and looks like the later you start the worse effect is noticed. Furthermore progressive MS may not respond as well RRMS.

      The only way is to do enough treatments and see the end result and if it works now, it could work in 10 years still but it may not. There are reasons for failures and this may depend on how the HSCT was done, and what is your MS like.

      Do people who underwent HSCT go back to normal, the answer is probably no, but I am sure many people who have had HSCT feel normal. If you look at the EDSS scores of the MS trials there is often some recovery but they do not go back to generally go to 0. The EDSS is a product of ongoing inflammation and underlying residual deficit, if you get rid of the inflammation the EDSS may drop because of that but may have deficit due to non-recovering damage. So the earlier you start the less damage you are likely to accumulate. This may also halt worsening and allow repair mechanisms to work which would

      HSCT replaces you existing immune system as the most extreme form of DMT, so if it is is successful and your MS does not come back. However if may not always completely replace you existing immune system

      The historical fear was the high mortality rate of the procedure, and the high cost the more studies done the more one de-risks the procedure. However we have to see the data, as is it easy for a few cyber evangelists to do their stuff on the internet.

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  18. The MS-UK website has an area called HSCT diaries where people who have had transplants talk about their experiences. Stella had hers in 2011 and lost some toes and went partially deaf due to complications- I'm not sure if it was a totally myeloablative or non- myelo. So chemo is not risk free and a walk in the park.

    Regarding haemo/oncologists- you would really need to expand their depts.in the UK if this was suggested. They struggle at times to find beds for haemo malignancies in their specialised wards, juggling patients between wards who are not neutropenic. I know one London teaching hospital had about 12 beds in its haemo isolation ward. I don't know how they'd cope with an influx of MSers.

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  19. Prof G - you have written that you are surprised at the number of patients will to take the risk is at least 3 posts I have seen on this blog.
    Can you answer why you are surporsed? Have you never asked your patients what risks they are prepared to take? I find your statement amaaing in itself as it seems to imply that you are not in tune with your patients...

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    1. The risks of a licensed DMT are very different to the risks of an unlicensed procedure like HSCT. With a licensed treatment regulators have looked at the data and have said this drug should be used in MS based on a detailed risk:benefit analysis. The same can't be said for HSCT. Which is why we need comparator trials; i.e. to compare the efficacy and safety in large numbers of MSers with a known entity. I personally don't think we should be offering HSCT outside of a clinical trial.

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    2. "The risks of a licensed DMT are very different to the risks of an unlicensed procedure like HSCT. With a licensed treatment regulators have looked at the data and have said this drug should be used in MS based on a detailed risk:benefit analysis. The same can't be said for HSCT"

      That one statement to me sums up the gulf between neuros and SOME MS'ers. I think you are talking about the risk to the doctor/hospital here,and NOT the risk to the patient. If Tysabri kills me, I am dead, if HSCT kills me, I am still dead, I, as the patient, am looking at statistical data and trying to making a decision, but I can't chose one option in the UK as the neurology community are not behind this, I don't think that i right... do you?

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    3. Agree the question here is risk to whom.

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  20. Hi - I don't suppose you will answer this but I will give it a go...

    If I have under 1% of dying from HSCT, and about the same risk for a less effective treatment liky Tysabri of contracting PML why do you think Tysabri is not as risky as HSCT?, When you weigh up the risk vs reward of HSCT, it makes perfect sense for a MS'er who wants to have effective treatments to want to take the risk?? Surely purely from a staticial point of view you can see that!! Y

    ou say that you are critized for being too pushy on these "effective" drugs, but you don't push for a treatment with the similar risk profile and better 3 year data than anything else? I am confused...

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    1. "If I have under 1% of dying from HSCT, and about the same risk for a less effective treatment liky Tysabri of contracting PML why do you think Tysabri is not as risky as HSCT?, When you weigh up the risk vs reward of HSCT, "

      I'd really like to know the answer to this question too, please.

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    2. Please, I would love to know your thoughts on the above?

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    3. I'd be very interested on your thoughts here? Are the above stats incorrect?? Or is there another reason why questions comparing Tysabri risk Vs HSCT are ignored??

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    4. You make a good point,but not being a clinician it is not a conundrum that I have to consider but the fact is HSCT is not licensed for MS. ProfG has worked in haematology and this may influence his thoughts, where he has stated his position that he thinks that HSCT needs to be properly tested in a head to head study.

      What would NICE say to the cost benefit


      Risk of dying from PML is 25% risk of PML in high risk group is about 1% so risk of dying is 0.25% however surviving PML means problems due to the PML however you can switch from Tysabri at two years and so that risk is mititgated

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  21. What does Dr Dre think?

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    1. At least the cost of HSCT is mostly out of the hands of Pharma. I don't Dre thinks risks are worth taking. Just settle back and let MS take you for a ride is Dre's attitude.

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  22. I'm amazed these results have come as such a shock with you guys being so proactive and MS savvy.
    MSers are not risk takers but we are risk aware which is very different to being risk adverse. Time for the MS profession to follow suite and hear what we are shouting.

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  23. How many MSers do you see in clinic doing ok after living with the disease 20 years plus? This blogs spells out the risks associated with MS very well so is it any wonder people want the best treatment possible? MS poses the biggest risk of all. I wonder sometimes if different opinions of acceptable risk between health professionals and MSers comes down to different values of what one considers to be quality of life.

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    1. There are a load of MSers doing okay after living with the disease for 20 plus years. They do not choose to follow this blog, they are too busy getting on with their lives. It's not that they have benign MS, it's just that they do not see this forum as a priority. If they did contribute to this blog, maybe the newly diagnosed would see positive comments as well as the negative ones.

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  24. As a new nearly-diagnosed CISer with a high probability of further relapses, I've been contemplating my own risk position when reading this blog. With two very small children, I don't think I would be ready to take a 0.5% chance of dying. I'm not really sure what % would tempt me. I suspect as they get older and my risk of SPMS increased, it'll become a more attractive option. The thought of the possibility of receiving a one-hit treatment with good results and a lower risk of secondary autoimmunity than alemtuzumab is obviously very appealing. So that's why I answered in a positive way for seeing HSCT being available or at least researched further in the UK for those who want to take the risk.

    MSers are in the best position to assess their own risk, although I guess that always has to take into account the fact no-one thinks they will be ion the wrong side of the 0.5%. Especially when you've already had got on the wrong side of some rubbish odds to have MS in the first place!

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  25. Oops, that meant to say as a newly diagnosed CISer, very high prob of being an MSer...

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  26. Re "the only common cell in relation to all the highly-active treatments is the B cell (daclizumab being the exception)":

    Do you have any ideas to explain the exception? Isn't it possible that the exception proves that the whole idea of MS being B-cell driven is wrong?

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    1. I think he will say that natural killer cells kill infections, B cells house the infection...the former drugs kill the B cell and the infection, the latter drugs create Natural Killer cells to killer the infection, it all makes a nice story.....other people will still wriggle to say it is all T cells.

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    2. B cells are featured on this siteam because it fits nicely with his theor as EBV being the cause if the disease. Dr. Burt is only interested in halting the disease for RRMS.

      Some Doctors are laggerts and it will be a while before change is made.

      I would love to hear a debate on this blog between Dr. Burt and Team G.

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    3. I don't think the majority of MS researchers are adamantly opposed to HSCT but they feel that it is an unnecessary risk to expose patients to a procedure that goes a bit farther than anti-CD52 and anti-CD20 therapies. I feel it is debatable as to the extent of lympho-ablation to achieve NEDA. A procedure for aggressive, highly active MS? We will have to wait for the trial results.

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  27. Do we know what the risk of dying from the disease itself is for the MS population? I know suicide rates are a lot higher with MSers but what about the risk of reaching EDS 10. Genuinely interested in finding out this.

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  28. Reading the results from 2015's UK abstract: Autologous haematopoietic stem cell transplantation in aggressive multiple sclerosis: a UK cohort from two centres. by the people from Sheffield and Kings has made me likely to go ahead with HSCT. As a first line treatment.... probably wouldn't have as you don't know how your MS will progress, but once you know you've got aggressive disease it's better to act fast. Time is brain as you've taught me!

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  29. Its all gone very quiet on this. Whats happened to ZEUS?

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    1. I suspect too few hours in a day....for ProfG

      ZEUS needs the HSCT labs to take up the challenge, a lab with no history in HSCT is never going to get funding.

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